AcroTales
AcroTales
Episode 17 - Vanessa
In Episode 17 of AcroTales we speak to Vanessa from Rhode Island in the USA. Vanessa was diagnosed with Acromegaly at the very young age of 21 and totally by accident too after a visit to see an allergy specialist! Vanessa's story explores the various conditions that she has, how these may have contributed and how Acromegaly hasn't stopped her living her life and - indeed - empowered her to help others who are facing the same struggles.
Hello and welcome to AcroTales, a podcast that explores the fascinating world of Acromegaly. Acromegaly is a rare condition caused by a penine tumour in the pituitary gland, causing an excessive release of growth hormones. My name's Diane Jeffries, and I was diagnosed with Acromegaly in 2007. In each episode of AcroTales, I'll be talking to fellow acromegalics from around the world about their journey with this unique condition. It's episode 17, and I am very pleased to welcome Vanessa from Rhode Island in the USA. Vanessa is 24 and was diagnosed with acromegaly in 2019. Vanessa, welcome to AcroTales.
SPEAKER_00:Thanks for having me, Dan. Excited to be here.
SPEAKER_01:Good. So I think the first thing to comment on is 24 is very young to be getting acromegaly, which I'm sure you know. And being diagnosed at 21 is obviously even younger. So tell us about how you discovered that you had this condition.
SPEAKER_00:Sure. So it all happened very um coincidentally. So I had had migraines most of my life starting in my teenage years, and my mother has migraines too. So we just thought that I got them from her. It really wasn't anything crazy. And that was only one of my biggest side effects that I had. And then I went to an allergy doctor back in 2019 with a friend. It wasn't even an appointment for me. And my the doctor introduced herself to me, took care of my friend, figured out all of her things, and said, Oh, like, do you have any allergies? And I was like, Yeah, just like environmental, nothing crazy. And she was like, Oh, well, you have like a very nasally voice, and started asking me different questions, like how tall were my parents, what was my shoe size and my ring size? And I didn't even know this doctor. And she was just asking me all these questions, and none of them really seemed to relate to one another. Um, and then I told her I was taller than both of my parents. My parents are both like 5'4, 5'5. I'm 5'9, and my feet are a lot larger than my peers. I'm about a size 11 shoe size, and I don't wear rings because they don't fit because my fingers um are larger as well. My ring size is about an 11 as well. And then the doctor said, I think you have acromegaly. And I was like, First of all, I don't who are you? Like I've never even met you before. Um, and then she shows me like those typical acromegaly pictures um of the woman with acromegaly. And she was like, I know that I'm just an allergist, but back in Russia, like I was this big like genetic doctor. And I was like, Oh, okay. And she said, just promise me you'll go see an endocrinologist straight away. Um, so then I went back to my parents' house and we started researching. Um, I'm a researcher by nature, so I just look into everything a whole bunch. And I also have Ellers Danlos, which is um a genetic tissue, genetic um disease. And I was diagnosed with that when I was 16. So we were kind of looking at how those two things were related. Um, my mom was making all kinds of phone calls to get me in with her endocrinologist um because I have hypothyroidism as well, as does she. So thankfully I was able to get in with her a couple days later. And I went to meet with the endocrinologist. She was trying to explain everything to me. She did um blood work, all these different things, and she basically said that the blood work, it doesn't always work. Like I might have to do some other different testing because the tumor isn't always picked up in the blood work. So I was like, okay, so I did the blood work, I left, and then the next day I got a call that my IGF one was about it was a little over a thousand, um, which was really high. So she was like, Yeah, you definitely definitely have this. Um, we don't have to do any other testing. Like this confirms it. Your IGF one is through the roof. So we're gonna go um and get you an MRI. Usually the tumor is about the size of a P. Um, they'll go in through your nose, they'll take it out, you'll be back to work the next week. So I was like, okay. So I went. Um, I got the MRI.
SPEAKER_01:Back to work the next week.
SPEAKER_00:That's yeah, that that was the plan.
SPEAKER_01:That's quite hopeful.
SPEAKER_00:Yeah, that that was the original plan. Um but I I kind of had a feeling that things were a little bit more than we had thought because the growth hormone levels were four times higher than normal.
SPEAKER_01:Um can I can I just stop you for a second? Just to take a breath. I mean, this is all pretty major news. I mean, how did you how did you deal with this? You know, you went into for your friend and you come out with a with a diagnosis. You know, how how did you find that?
SPEAKER_00:Um, so it was it was shocking, but I I think I handled it pretty well. Um I'm not really someone that gets shaken up really easily.
SPEAKER_01:Um I think I guess I I guess maybe has because you already had uh is it Elis Danos? Elis Dandlos, yeah. And and um was it the was it thyroid you said? Yeah. So maybe that you've already had some kind of conditions associated with you already another one coming along. It's not great, obviously, but perhaps it wasn't a big surprise.
SPEAKER_00:Yeah, it was it wasn't really a big surprise. Um, because I was also diagnosed, I think, a couple months before that with polycystic ovarian syndrome, um which ended up also being part of the acromagaly.
SPEAKER_01:Okay. Um sorry, I didn't mean to interrupt, but I just I just wanted to take a breath for a second. So so uh let's return to uh where you were at.
SPEAKER_00:Sure. So I went to get the MRI, um, was told it was gonna be the size of a P. And they did the scan. It was my very first MRI, I'd never gotten one before. Um, so they put the contrast in and it burned a little bit. And I was like, oh, that's probably normal. Like I'm not really one to complain, so I didn't really say anything. And then they came into the room where I was getting the MRI, and they were like, oh, we can't really see anything in the scans. Like, I don't think there's enough contrast. And they looked at my arm and the contrast like wasn't in my vein all the way, so that's why it was burning.
SPEAKER_02:Oh my god.
SPEAKER_00:And so then they had to put the IV in my other arm, and then it was fine, and they were able to see everything. And then I just remember them saying, they gave me an ice pack after the MRI, and they were like, Oh, take this ice pack back home with you to ice the arm that um the contrast got messed up with, and you can take this ice back home or wherever you're going. And I was like, What do you what do you mean wherever I'm going? Like, that's that's kind of like a weird thing to say, right? So they were like, Oh, can we have your mother come in the room because she was in the waiting room? They're like, Can we call her in? I'm like, Yeah, absolutely. Like, you can call her in, like whatever you need. And they were like, All right, go put your clothes back on because I was wearing scrubs. They were like, Go put your clothes back on and then come in here because we're talking to the radiologist at Rhode Island Hospital. And I was like, Okay, but I still didn't really like know what was happening.
SPEAKER_01:No, no.
SPEAKER_00:And they all seemed very nervous. And um, I cope a lot with humor. So I I looked at them and I was like, Oh, what is it? Like, do I have a brain tumor? Because I knew I had it, so I didn't want them to feel like they were breaking the news to me. Okay, okay. Because that's just how I am. Like, I want to make everyone feel more comfortable. Um, so then I went and I changed and I came back, and we were on the phone with the radiologist at the hospital, and they were like, Yeah, so the tumor is bigger than we had expected, and it's swelling on your frontal lobe. So we're gonna take you to the emergency room. Wow. So I was like, Oh, okay. So then, like, I was getting a little bit nervous, but still like nothing crazy. And we called my endocrinologist who had encouraged us to go to Mass General Hospital. Um, so we wanted to call her first to see if we should go straight there or if we should go to the local hospital near us. And she she was out that day, of course, just how things happened. And we ended up going to the local hospital, and they told us that the tumor was much larger than what they had seen. It was a macro adenoma. Um, it was about the size of a golf ball.
SPEAKER_01:Wow. Did they did they say how big?
SPEAKER_00:It was, I think five centimeters.
SPEAKER_01:Yeah, that's that's pretty big.
SPEAKER_00:Yeah, it was it was definitely big. Um, I wasn't surprised. I always tell people that I'm an overachiever, so obviously my tumor is gonna be the biggest one. Um so it was definitely the biggest one that they had ever seen, and I was also the youngest case that they had ever seen.
SPEAKER_01:Right.
SPEAKER_00:Um, which did make me a little bit nervous, um, made my parents a little nervous as well. But I stayed there the whole weekend in the hospital and I got any scan you could ever imagine CAT scans, MRIs, um, EKGs, like all the testing imaginable, waiting for the surgeon to come on Monday when he told me all of these different things. Um and then we told him that we were gonna go get a second opinion because he wanted to book the surgery right away just because of the swelling and everything. Um, but we asked to go get a second opinion at Mass General Hospital, which is where I ended up having the surgery. Um, because they have a whole neuroendocrine clinic there, which is phenomenal. Like the team's the best. I can't speak highly enough of them. Um so we went there probably about like a week or two later, they were able to get us in pretty quickly, I think, because the tumor was so big. Um and when I got there, I started doing um the growth hormone injections every month to try and see if they could shrink the tumor a little bit without surgery. Um, so we did that from April when I got diagnosed until December of my craniotomy. And so I got the craniotomy in December of 2019.
SPEAKER_01:Wow. So you so you had craniotomy rather than transphenoidal?
SPEAKER_00:Well, I had the craniotomy first.
SPEAKER_01:Um how come they how come they decided that?
SPEAKER_00:So they decided that because the tumor was so big and because of where it was located. So the craniotomy, it was about a 13-hour surgery, and they debulked a lot of the tumor and got a lot out of it, but not everything. So I kind of knew that it was going to be more than one surgery just because the tumor was so large. Um, and because it was so large, the growth hormone injections didn't really do anything to it. But after that surgery, my growth hormone started to lower a little bit, still not in the normal range. It wouldn't be in the normal range until about two years later. But that surgery definitely helped a lot. I could see things like my ring size was getting smaller, my shoe size was a little smaller, my feet weren't as wide anymore. Um, which I think happens a lot from what I've seen in the community, like people's symptoms.
SPEAKER_01:Oh, yeah, you definitely start to sort of re revert back to, you know, some semblance of how you were again. And I guess maybe you know, it if you're in your younger years and if you know the tumor hasn't taken, hasn't been sat there for 15 or 20 years, there is much more chance of that kind of soft tissue change. Absolutely. Uh returning. So had you noticed a sort of change in your appearance then?
SPEAKER_00:Um, I had noticed, well, it's funny because my a couple weeks before I got diagnosed, my mom said that my chin like jutted out a little bit. And she was like, Oh, it's just something I noticed. But I see myself every day, so I don't really like notice these little changes, but she had noticed it. And it was just kind of like a weird coincidence that she had said that, and then I got diagnosed a couple weeks later. Um, and there's no way to see like how long the tumor's been there, obviously, but they think probably about like four or five years at least.
SPEAKER_01:Okay.
SPEAKER_00:Probably right around high school age is when I got it.
SPEAKER_01:Wow, so that's I mean, that's a pretty pretty amazing story so far. Um to find out A in that way and then have to go through the craniotomy. So following the craniotomy, then I'm guessing you had to go in for second surgery, or did you did you also go have treatment as well?
SPEAKER_00:So after the first surgery was in December 2019, then I was out of work for more than a week. Um a little bit more than promised, um, which was okay. And I was scheduled to have the second surgery, the transphenoidal, in March, but they wanted to give me time to heal, time for the tumor to kind of fall down from where it was. Um, because they had to be really careful too, because the tumor is wrapped around my optic nerve.
SPEAKER_01:Right.
SPEAKER_00:Um on my left eye. So all the doctors say that I shouldn't have vision in my right eye, excuse me, not my left, because of where the tumor is. But I do, which is like a miracle. I wear glasses, but other than that, my sight is like completely fine. I don't have like the peripheral vision issue or anything like that. But they did have to be super careful because it was damage it, yeah. Yeah, that they saw in the craniatomy. Um, so in February, because of the Ellers Danlos, everything on my body heals really quickly. Um, so by the end of February, I was feeling like almost 100% like myself again. Like I just I think it was because I'm a lot younger too. So I just healed um really quickly. And I asked my surgeon if she would be open to doing the surgery a little bit sooner than March 2020. Um, which I'm glad I did because then the pandemic started and my parents wouldn't have been able to come into the room or anything. But I had asked because I'm very type A and didn't want to go back to work for a week just to be out again for another surgery.
SPEAKER_01:No, of course.
SPEAKER_00:So I asked my surgeon if we could push it up a couple weeks, um, which was a miracle in itself, again, because of the pandemic happening. So they did the transphenoidal surgery in February of 2020. Um, same thing, 13 hours um went through my nose. Yeah. Yeah, both of them were really long. That's very long.
SPEAKER_01:That's very long for transphenoidal. Okay. There must have been obviously, like you said, a lot of complex spaces where where this was sitting.
SPEAKER_00:Mm-hmm. Yeah, because I guess what I've been told is my tumor is very sticky. Um so they had to be really careful. It's again with the optic nerve and everything. Um so yeah, it was very complex surgery. And then I was out of work. I didn't go back until around like March or April.
SPEAKER_01:Okay. And and was this was this set of treatment successful? Did they manage to grab more of the tumor?
SPEAKER_00:They did. Um, they grabbed more, not as much as the craniotomy, but there also wasn't as much left.
SPEAKER_02:Yeah.
SPEAKER_00:So they were able to take a lot of it. And then I had a little bit of break break from surgery and everything. And all throughout this, I was doing the um growth hormone injections. I take um somotulin depa once a month for the injection. And then in December of 2020, so at the end of that year, I started radiation for six weeks. Um every every day for six weeks, Monday through Friday, I would drive up to Boston from Providence um to be in there for maybe like 10 minutes. It was very quick because they had to be so careful, again, because of the optic nerve. So it was instead of like a long session of radiation, it was two weeks of like very quick little zaps.
SPEAKER_01:Um and was that successful too?
SPEAKER_00:So I have my MRI tomorrow. Um you got to find out then. Funny timing. Yeah. So I have my MRI tomorrow, but it's been a year since the radiation. So we'll see.
SPEAKER_01:Um do you feel better in yourself?
SPEAKER_00:I do. I feel much better. Um, but I didn't really feel bad to start because it was just the migraines. Um, so I got really lucky. I didn't get a lot of the side effects that a lot of people in the Acromegaly community get, um, which I think again has to do with being younger than most and catching it early, I think. Yeah, and catching it really, really early. Like I'm one of the youngest um in the neuroendocrine clinic that I go to at Mass General. And yeah, I was very, very lucky. But my IGF one is finally back in a normal range, which was amazing. Yeah. So it took almost three years, but it's finally back to around where it should be. And I can definitely tell like the swelling in my fingers has gone down um over this process. I had gotten engaged and my ring fits well. And even some days it's like loose, which is crazy because that never would have happened before. Um yeah, so that's that's really exciting.
SPEAKER_01:Well, I mean, first of all, congratulations on getting engaged. I mean, that must be that must be great. And uh, you know, I guess there's possibly a time a couple of years ago, I know you're I know you're younger then, but you may not have even considered that was on the cards, you know, because I I think the condition does put a definite weight on us, a sort of mental weight, and sort of brings us right down. Um now you're kind of out the other side. I mean, you know, how how is life different for you? And and also I would ask, what would you what would you advise anyone who's been diagnosed with this condition?
SPEAKER_00:Sure. So how is life different? I think just like the little things, like the ring finger and being able to go out and buy shoes without having to look for something that's like a wide width, like just being overall less like swollen in my body and feeling like I'm more in control has been really great instead of feeling like the tumor is like controlling me. Um but I'm a big believer that everything happens for a reason, and without that allergy doctor, I wouldn't have known, and I probably could have gone a long time into my 40s or 50s, totally undiagnosed. The tumor could have grown, it could have gotten a lot worse. Um, I could have lost my eyesight, and that allergist basically saved my life and got me to where I am today. And then, as far as advice for others that have been recently diagnosed, um, so I'm in a lot of different support groups on Facebook and I talk to a lot of um folks that have been recently diagnosed or are just about to get the surgery because now that I'm on the other side, I'm really passionate about giving back and helping people through what I went through. Um so I would just say not to be afraid um that they're gonna be okay and definitely have a really great support system. I was so lucky to have the support system that I've had. Um, and my mom's actually in the support groups as well, and she'll send me texts and messages and like, oh, like this person needs your help. So like that's what I really enjoy doing um now after the fact. I love helping people and talking them through everything and even like, oh, well, they'll tell me a side effect. I'm like, yeah, well, you should like tell your doctor that. Like, that's that's not normal. That could be something with acromegaly. And I I'm very vocal about my story. I'm so excited to be on this podcast, and I love sharing my story with others in any way that I can. And I share it a lot on my own social media accounts, and I shared my story and actually had a friend reach out to me saying that she had all of these symptoms and all of these things, and I helped to connect her with different doctors and resources in the community, and she actually ended up getting diagnosed not with acromegaly, but with cushions.
SPEAKER_01:Wow. Okay.
SPEAKER_00:So it's really interesting what sharing your story can do and just getting the word out there and bringing awareness to this because it's such a rare condition.
SPEAKER_01:Yeah, I mean, uh I completely agree, and thank you for you know what you're doing and and for coming on here as well, because uh uh it is a big thing to tell your story. Um, you know, this is the point of AcroTales, really, was to try and get an archive uh of different experiences, but also to appreciate that there are some commonalities in those experiences. And and when you sort of piece all of those together, uh, you know, I think it if you listen to this podcast, it may help you help diagnose someone else or you know, just see those things, uh, and and try and shorten that, shorten that um uh diagnosis from you know what is on average about seven years to something lower. And and that's exactly you know the benefit of your um uh what was it, the um what was her your friends uh that you went to visit the allergist. Yeah, I mean you wouldn't expect an allergist really to be diagnosing acromegaline. Yeah. Uh it it it's very strange. So the one thing I would say, if you haven't listened to it already, is um have a listen to Lauren's story. Lauren is the first episode uh and her story is n pretty similar to yours. Uh unfortunately, Lauren has lost an eye um uh and lost sight, and it's had to be removed and replaced with a with a false eye. But very much like you, her her attitude and uh and approach to it is you know, with humour, with I can get through this, you know, and that's what you have to do, isn't it?
SPEAKER_00:Yeah, absolutely.
SPEAKER_01:Okay, well, look, Vanessa, thank you so much for sharing your story. It's been absolutely fascinating, and I'm I'm really pleased you're through the other side. Uh, and you know, engagement and marriage is on the cards. Uh, and your ring fits. I mean it does.
SPEAKER_00:It's very exciting.
SPEAKER_01:What could be better? So thank you so much.
SPEAKER_00:Thank you for having me. This has been great.
SPEAKER_01:So if you found Vanessa's story interesting, and how could you not and you want to hear other Acrotales, head over to Acrotales.com, where you can find the ever-expanding library of interviews. And of course, you should subscribe to the podcast to receive the latest updates via iTunes and Spotify. So, once again, a big thank you to Vanessa, and this is Dan signing off, and I'll see you next time for another episode of Acrotales.